Friday, February 8, 2013

The Final Steps in My Hepatitis C Treatment Journey

I'm nervous. Or is it anxious? Either way I am out-of-sorts and, quite frankly, I just want the next 10 days to fly by as quickly as possible.

You see, I go for my six month post Hepatitis C treatment blood work this weekend and apparently I am all freaked out about it.

This is the big one. These are the lab results that tell me whether or not the treatment I got worked. When I get the results, I learn if I have achieved something called SVR, which stands for "sustained virological response." With the new antiviral drugs, like the drug Incivek that I took, the medical community to starting to consider SVR as the marker for a "cure."

Now that's pretty heady stuff.

I don't expect bad news. My three month post-treatment viral load came back undetectable. Since that test is a good predictor of the six month post-treatment results, I expect that this next result will be undetectable too.

But I don't want to take anything for granted.

It's weird when you live with a chronic, active infection for 25 years. Hepatitis C became part of who I was in a lot of ways I hadn't really considered until recently. Not that I want to keep living with it--no way, no how!

I don't want to be contemplating the worse case scenario either. You all know that treatment was really difficult for me and I certainly do not want all my efforts to be in vain. I can't even think about having to do it again without feeling massively discouraged.

Becoming Hepatitis C free is such a HUGE deal...and I really want this so badly.

My body knows this is a big deal and I can feel it responding to my anxiety by overreacting. This is nothing new to me. My dysfunctional brain goes into overload mode in the presence of any ongoing stimulation, be it good news or bad. That translates into increased insomnia, sensory overload, worsening symptoms, tachycardia and general grumpiness, physically, mentally and emotionally. Which is really just another day living with the ups and downs chronic illness.

Which leads me to the next thing I want to share with you today...

I really want to be able to say to you that, since Hep C treatment ended, I have seen improvements in my health now that my viral load is undetectable. That just hasn't happened yet, and frankly, I'm a little concerned that it isn't going to happen either.

Honestly, given how much hope for improvement several of my medical providers pinned on a successful treatment outcome, I feel tremendously let down.

I still live with chronic, debilitating pain. In fact, I have more pain now than when I was on treatment. Weird, huh? I'm not exactly sure what that means, but I do know that at one time low dose interferon was considered a treatment for fibromyalgia.

I still deal with chronic, energy-sapping fatigue. Not sure if that just means my body needs more time to heal from treatment or if Hep C wasn't the cause of my fatigue.

My blood sugar is better, but I still have type 2 diabetes and probably will for the rest of my life.

Plus I've learned some disappointing information. Seems Hep C can trigger things like fibromyalgia since the little buggers can get into your brain. They turn on a switch that makes things like chemical reactions and neurally-mediated pathways go all wonky. Unfortunately, getting rid of Hep C virus doesn't flip the switch off according to rheumatologist Mark Borigini, M.D in an article over at Psychology Today. Rude little buggers didn't turn the lights off when they vacated the premises!

And I am still dealing with three treatment-related complications that need continuing medical attention. Quite frankly, I am getting quite annoyed with these linger health issues and I am ready to switch doctors yet again in an attempt to get these problems resolved once and for all.

Oh, and I am having a hard time getting a follow-up appointment with my new internal medicine doctor. She's the one giving me the the results of the lab work I am having drawn this weekend. A scheduling snafu is one more aggravation I don't need right now.

Thankfully I do have another doctor (actually her nurse) who I can email and ask for the results. Because I would hate to have to wait, and wait, and wait to get these lab results. Any delay is going to make me want to tear out my newly grown-in hair.

Huh. I guess I really do have a lot of reasons to be feeling stressed out and short-tempered lately.

I need chocolate and lots of hugs and kisses. Good thing Valentine's Day is next week, which gives me the perfect opportunity to request increased quantities of all of these. Thank goodness I have folks in my life who can give me chocolate, hugs and kisses. So I guess my life isn't that terrible after all.

I went through the combo treatment, over 10 years ago, I'm still not right. Pain, insomnia, dizzy- my friends say no difference- cognitive impairment etc. On the lighter side if it weren't for a sense of humor I'd be penniless. I do know you are not alone and if any doctor states otherwise, get another doctor. With all I've gone through and read I've come to realize; we need to help eachother. Keep moving and listen, watch or read comedy. These help me cope with that which I know to be true. P. S. I'm Tommy my wife is SallyPeace